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Sjogrens Topics => Living With Sjogren's => Topic started by: Annj5 on April 23, 2008, 10:15:09 AM

Title: Bulge battles
Post by: Annj5 on April 23, 2008, 10:15:09 AM
I love my rheumy, but honestly. Had an appointment this week and was venting about the fatigue again. She is very supportive but brought up the issue of my weight. I know that having less of me to haul around would definitely go a long way to preserve my energy.  She's right, I know, but I find it so hard!!!!! to lose weight when it seems that exercise is so difficult right now. When I walk the dogs or do a yoga tape or whatever, I have to rest for hours afterwards. Didn't used to be this difficult.

Anybody have any suggestions? I have looked into weight watchers, anyone have any experience with that?

Title: Re: Bulge battles
Post by: Linda196 on April 23, 2008, 10:53:27 AM
A perfect example of the vicious are slowed down because of pain, so you gain weight, which causes pain in the weight bearing joints, which slows you down even more, and so on.

My rheumy almost accused me of going off my prednisone on my own, because I managed to lose about half the weight I had gained when I was started on high doses. He told me it was almost impossible to lose weight while taking steroids, but I found that  limiting portions was my key...I always ate "healthy" as in no processed foods, lots of fish, very little red meat, no simple carbs, and lots of water (of course, I'm a sjoggie). I just ate enough healthy for about three people!

Of course the whole thing would have been much easier if I could still exercise, and wasn't taking the steroid, but I increased my activity by tiny increments (as tiny as walking across the road and back, instead of just to the mail box on my side of the road), or parking just a few spaces farther from the door, when I was energetic enough to shop at all. I had been able to wean the prednisone down from 30 mg/day (at which I couldn't lose an ounce) to 10 mg at which point I was able to get some control.

I'm not in a position to get to a Weight Watcher's program, but I found an online program called Spark People that helped a great deal with menu planning, nutritional information, and discipline.
Title: Re: Bulge battles
Post by: heyamy on April 23, 2008, 11:07:39 AM
I'm a fan of too. You type in your goal and when you would like to reach it, any realistic exercise you plan to do, and it calculates everything for you: calories/day including a healthy range for carbs, fats, etc. It was easy for me to limit portions when I had to see the numbers increasing after each meal. There's a lot of support there too, if you are interested. You can also use to calculate the nutritional information of meals you create.
I feel so so so much better exercising. I started out just a little on the treadmill, increasing and adding incline. Now I'm doing an hour of aerobics/day. 90 year olds can increase muscle mass with exercise, so darn it, I can too.
When my neuropathy really hit over two years ago, it was exercise that helped me feel human again. But I had stopped when I returned to work and became anemic, and started down the path of overwhelming pain. Now I feel like I have some control over it again. And it does make me feel like I have a lot more energy. It also feels good to reach a goal and have some success when you feel your body has conquered you.
Good luck! I hope you can make some progress and feel a little better.
Title: Re: Bulge battles
Post by: pixi on April 23, 2008, 01:14:04 PM
Have you tried aqua aerobics? It's great way of losing weight, but gentle on your joints. I am hoping to start it up soon as every other exercise causes too many injuries. I started pilates recently, though fairly gentle I had more pain and injuries than I expected. Trying to maintain weight and exercising when you have Ehlers Danlos is very hard work. I have gained 14 pounds in less than a year and really want rid of it. I know cutting out alcohol would really help, but it's a great painkiller.
Title: Re: Bulge battles
Post by: susanep on April 23, 2008, 04:33:01 PM
I don't know what to do. I Have a lot of weight to lose. Last week feeling a bit better, and eating healthier, I did a few exercises very mildly, but made me feel so good. I worked Monday, then became very inflamed, and aching all over, and home the past two days trying to recover. I don't know what to do anymore.

Title: Re: Bulge battles
Post by: Annj5 on April 23, 2008, 06:50:07 PM
Whoa! Thanks for the referral to! What an awesome site. I will take advantage of this - and I love that it's free.

Susan, I feel the same way that you do. It seems as though I am physically punished for several days after I make an effort to exercise. I think I will really have to scale back on my expectations and take other's advice to move forward in baby steps. Being on prednisone, as everyone here knows, with the increase in fluid retention and also increase in appetite.......good grief. I have significant weight to lose too, and sometimes that in itself is overwhelming. I am impressed that with your physical problems, that you are still able to work. That must take a great deal of dedication.

Do you think that keeping a record of everything that you eat really makes a difference? I have such a problem with that, gosh, not because I don't have time on my hands, but maybe I just don't want to face up to poor food choices that I am making.

I was also hospitalized recently with an obstructed kidney stone - not fun - and as a result have a restricted diet for oxalates. It seems that oxalates are high in berries, green leafy veggies, deeply colored fruits and vegetables, nuts ....... in other words, all the HEALTHY stuff that I'm supposed to be eating! My diet list says that I can eat all I want of white bread and drink all the pop I want  :o

Title: Re: Bulge battles
Post by: quiger on April 23, 2008, 08:22:02 PM
I first saw the Sparkpeople site on Oprah. It looked real good and so great that it is free. I get email info from them every day.

Title: Re: Bulge battles
Post by: susanep on April 23, 2008, 08:29:09 PM
Annj5 I keep working because my husband is disabled so I am the only one to bring in some money. Some days I do good considering, but when I'm in a bad flare, it's rough. I will be ok though.

Title: Re: Bulge battles
Post by: quiger on April 23, 2008, 08:51:18 PM
Susan, I know how you struggle at times and yet you plow through. I don't know how you do it. The school year should be over in a few weeks and hopefully you can recouperate over the summer. I had to stop working about four years ago and it was one of the hardest things I have ever had to do. Now I am grateful when I am feeling so bad that I don't have to go to work. But it was a difficult adjustment for me.

I hope you start feeling better.


Title: Re: Bulge battles
Post by: irish on April 23, 2008, 09:26:59 PM
Ann, I hate to tell you this but chocolate is high in oxalates as is rhubarb, I believe. My sister had a kidney stone so she has to watch her diet. She is a nurse and was "scrubbing" in surgery quite a few years and some of the cases got so long that she didn't have time to drink enough fluids. She had a very bad backache one day at work and she had to scrub out and go to ER where she proceded to pass a kidney stone without the benefit of pain meds. The doc and ER nurses didn't believe her until they got the priviledge(lol) of seeing the little sucker in the strainer.

Also, I am with the rest of you with the weight issues. I used to do more exercises and this past year or so I had felt to rotten that I just wasn't as active and just couldn't do much in the way of exercise. With my myasthenia I am sort of limited because the doc told me to stay away from too much exercise as it could send me into a bad spell. I am feeling better now with the new IVIG product I am getting plus they increased my thyroid med. Soooo, I am in the process of trying to figure out how much I can tolerate.

I am sitting here looking out at my garden during the day and trying to figure out how to get out and rake the flower garden and dig up the few perennials that are left. The garden goes to grass as I can't take all that weeding.

Also, I will check out that spark site too as I just started to watch my food intake as my blood sugars have been up. I have not been diagnosed with diabetes yet but I am fat, 65 and on prednisone with a family history of type one and 2 diabetes. The one thing that I have always been able to do is lose weight overnight and the more I slept the bigger chance I had to losing some weight if I watched the calories. Problem is I don't get enough sleep.

Maybe we should have a weekly weigh-in and see how much we can lose collectively. A couple of years on this site we had talked about having a diet thread but it never got done. Guess something came up. Any suggestions from the group as to how to go about this and someone to take charge of it would be welcome. If anyone is interested in this idea---maybe it won't work online. Thanks for all the sharing on this horribly painful subject. I have saved all my clothes and have enough to go back 2 sizes which is really what I would like to do. Irish ;D

What precipitated the weight loss thing was going through our clothes closets. I had gotten a suit dry cleaned and ready for my hubby on occasion of his funeral and I don't fit into any of my nice dresses. I DON'T HAVE ANYTHING TO WEAR TO MY FUNERAL!!! He is soon 70 and I am 65 so I am trying to get things in order slowly so the boys and wives don't have a mess on their hands. I have to admit that I buried my mother-in-law in the wrong dress. May she forgive me.
Title: Re: Bulge battles
Post by: Linda196 on April 24, 2008, 04:02:53 AM
Irish, I'm shaking because laughed so hard! When my Mom was ill, we had a week in the middle of her last months when we were convinced she was leaving us...she was (as the medical community refers to it) in extremis, which simply means "near death" for about 5 days, when one morning, with my sister and I at her bedside, she simply woke up demanding to know what was going on and why were we having a slumber party. She had conveniently forgotten the diagnosis and turmoil of the preceding 3 months!

When we gently reminded her of the situation, she said, "Oh I can't die yet, I have nothing to wear!" She proceeded to recover sufficiently in the next month that she was able to go shopping, got the dress she wanted, and then gently slid away from us about 4 months later.

I finally saw one of those "celeb weight loss " pitches that I liked...Queen Latifah is doing ads for one of the weight loss companies, but her focus is health rather than appearance. Without divulging her weight, shes is reporting losses in % of total body weight, which is the healthy way to do it. I was able to lose 10% of my total before stalling out, but now I'm making another active attempt at 5% more.
Title: Re: Bulge battles
Post by: susanep on April 24, 2008, 07:57:59 AM
Thanks quiger :)

Title: Re: Bulge battles
Post by: heyamy on April 24, 2008, 10:06:37 AM
If you're having trouble figuring out how much exercise your body can stand, I ordered an arthritis fitness tape a few years ago that started out very easily. It had people exercising in their wheelchairs or just chairs - various levels. I may still have it here, if anyone is interested in owning it.
When I first started exercising after the nerve pain began, I tried aerobics on a ball. It was very gentle and I had fun doing it.
Sparkpeople is wonderful. You can put a goal of 10 minutes (which was what I did at first) of exercise and just fill out the information each day. If you then increase your minutes of exercise, it readjusts your calorie intake. But you can enter calories you burned from something extra you did that day. Taking the steps, etc.

I wish everyone the best of luck.

Title: Re: Bulge battles
Post by: Annj5 on April 24, 2008, 11:11:32 AM
Irish, you are a hoot! :D
Yes, unfortunately I know about the chocolate and rhubarb. I have the whole stupid stinkin' list posted on my refrigerator door.........
I don't really care about the rhubarb but as for the chocolate, not sure I can go the rest of my life without it. It's one of my main food groups! I wonder if carob has oxylates?
If the mods decide to start a weightloss issues section, or thread, or whatever - count me in. I am struggling.
Title: Re: Bulge battles
Post by: Tamik on April 24, 2008, 12:19:18 PM
Annj5 -what do you teach?  It sounds like we are a lot in the same boat- my husband is disabled as well and I have to work - I was dying in my classroom and in bed by 4:30 every day totally wiped out.  I started teaching HS online and it allows me teh freedom to take naps when I need to and to work around my fatigue, pain, doctors appointments, etc.  We are expanding to 7 more states next year - just an idea.. there are also K-8 online programs.  Check your state to see if their are online options so you can work from home.  These are public schools -not private. 
Tami K
Title: Re: Bulge battles
Post by: Annj5 on April 24, 2008, 01:00:56 PM
Hi Tami,

I think that you might be referring to Susan, see her earlier post. She is a teacher.

I am a retired RN.

What a great idea - to be able to teach classes online! Wish that were an option for nursing but it would  be hard to pass pills that way :D.
Title: Re: Bulge battles
Post by: Linda196 on April 24, 2008, 01:29:35 PM
I'm with you Julia, it would have been lovely to "phone it in" some days, but somehow nursing just doesn't lend itself to that, does it. I must admit to doing that with some aspects of one of my last jobs...I was a nurse specialist for plasma exchange therapy, and was able to order and assess lab work from home by phone (now I guess there's an on line accessable hospital/doctor remote interface), but for some reason they still expected me to show up to actually do the treatments.
Title: Re: Bulge battles
Post by: irish on April 24, 2008, 09:01:31 PM
Say, you 2 other fellow nurses, do you think that some day the patients can stay home to be treated by the nurse that stays home??? Somehow I think there is going to be something missing in the medical field in the near future.

Virtual nursing care!!!

This is the pits trying to stop eating!!!! I have had a bad couple of days. I am doing better than before, but still eating things that I shouldn't. Say, did you ever try those Quaker caramel rice cakes with a little peanut butter on them and 1 /4 cp of ice cream or so. To die for. I kept the amount small but yes, I ate ice cream. You all know this is my favorite comfort food. I live in fear of not having any in the freezer.

When I go on my 1400 ::) calorie diabetic diet they had better figure in one serving of real Pepsi a day and a little ice cream. You know I quit smoking and don't drink---you'd think there would be a little justice in this world. Irish ;D

Linda, the story about your Mom was something. I think we all can relate to that. I am really ashamed that I buried my MIL in the wrong dress. She had showed me the dress she wanted about a month before she died. Then when it happened I couldn't remember. Today 11 years later I remembered that she told me she wanted to have her neck covered up. Well surprise, surprise, I put her in a dress with a lower neck---however, I did have them put a necklace on her. I hope she will forgive me when I get to the pearly gates. Irish ;D
Title: Re: Bulge battles
Post by: genko_b on April 24, 2008, 10:55:22 PM
Our family has a story about getting dressed for a funeral: My maternal grandfather died at the end of the Depression, and my grandmother had to scrounge to find decent clothes for his open casket funeral. She could not find any shoes without holes in them, and had no money to buy any. Finally my mother found a pair at the back of the closet, in a box, virtually unworn. No memory of these shoes at all. But they took them to the funeral home and they fit, so he was buried in them.

My grandmother remembered about the shoes when she was in church the following Sunday. She started laughing so hard my mother thought she'd gone mad from grief and hustled her out of the church. Grandma said she finally remembered buying the shoes ten years before, when they still had some money. My grandfather had told her he didn't like how they looked and they pinched his toes. His last words on the topic were, "Katie, I wouldn't be caught dead in those shoes!" So my grandmother got the last laugh on him, a rare event.

On the issue of exercise, I have a whole series of exercises given to me by the excellent physical therapy department at Northwest Hospital here in Seattle, years ago when my RA was very active. They are very low impact but good for balance, bone strength, and mobility. Walking is still the best for aerobics, I guess.

But for me the problem is finding the time to focus on all this. By the time I finish everything I'm supposed to do to take care of myself, starting with the eye-drops and balance exercises in the morning, it is time to go to bed again. Who can do all this? I can't. Then you can't sleep for feeling guilty. Oh well, all we can do is just do the best we can.


Title: Re: Bulge battles
Post by: Tamik on April 27, 2008, 04:31:40 PM
I did mean Susan -sorry -I think virtual nursing sounds great!  - Jsut think -we could be patients in the comfort of our PJ's.  :)  My main problem with food is that I am just not hungry and nothing sounds good-  I have been keeping a food journal for the last couple weeks and am only averaging 600 calories a day - I am just not hungry anymore. I am wondering if this is related to my Pernicious Anemia or my sjogrens.  Keeping the journal really opened my eyes though and now I am forcing myself to eat more.  I feel like I am eating all day now and barely hit 1200 calories.  600 calories a day could be a reason I am so tired as well -    I am going to try Irish's recipe with the quakers, peanut butter, and icecream! YUM!   I haven't lost a lot of weight though so I am not too concerned yet.  Tami K
Title: Re: Bulge battles
Post by: susanep on April 27, 2008, 07:02:14 PM
Hi Tami,

Teaching online sounds great. I teach k-4 special education, so I guess that leaves me out.
I told my husband today, I think my symptoms are getting worse. There was a couple of days I could barely open and close my hands. You take care, and get plenty of rest.

susanep :)
Title: Re: Bulge battles
Post by: irish on April 27, 2008, 09:27:18 PM
susan, God Bless you for teaching the special ed classes. I think that is a lot harder than teaching a regular class. I have no real knowledge except for talking to people I know who teach and teachers aides who help in the special ed classes. So many different problems and age groups to tend to. Irish ;D
Title: Re: Bulge battles
Post by: Shari on April 28, 2008, 06:30:24 PM
I used the Dr. Phil diet....not sticking to the whole book but using the daily meal planning where you pick the items from the food groups.

After a time..short time my cravings subsided to I started skipping a meal or a snack and started putting on weight discouraged and started the brownie diet again!

Anyway, it worked..and would have continued had I not skipped was all very basic and made sence.  I may get started on it again as i am sick of the same commentary running through my head about my weight.  YUCK!

Will check out the site..sounds interesting.

Each night it is lonely here so I have a party in my mouth with sweets and peanut buter sandwhiches.  I think I need to stop partying so much!!

Title: Re: Bulge battles
Post by: Linda196 on April 28, 2008, 07:06:42 PM
After discussion in our staff meeting, and seeing the great response this subject is getting, we have placed a "sticky" topic in the general discussion board, sort of our own "weight control support group within a support group". Check it out, feel free to post, ask questions, offer suggestions or support.

We will have to be somewhat different than most weight groups, because most of them deal with only weight loss, we can talk about the need to lose, the need to gain, how to control weight when taking sabotaging drugs, or when adequate nutrition is altered by sore mouths, the inability to taste or swallow, and drug reactions.

Our goal is to focus on healthy weight management!
Title: Re: Bulge battles
Post by: Katybarstool on April 29, 2008, 12:10:27 AM
LInda, wonderful. I shall look forward to joining that thread.